F.E.A.S.T's Around The Dinner Table forum

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southernmom1582
My 13 year old (step) daughter was just diagnosed with AN about 3 weeks ago.  We just made it through our 1st week of treatment.  She goes 3 days a week for IOP.  The drive is 2-2 1/2 hours one way, we are there from 5-8pm 2 of those days and 3-8pm on 1 day.  This gets us home close to 11pm at night.  School starts Monday and I have been trying to get the 504 started.  I submitted my letter requesting the meeting.  The counselor at school told me to bring in any medical papers I feel is important.  It looks like I will have to write out all the accommodations we want and they will consider it.  There is not any forms for us to look at to do this 504.  So it has been very stressful.

We are in Alabama if that helps.  Our school district has very little online to help us with this.  What accommodations should I be asking for.  I know we need her watched at lunch.  She should have 30 minutes to eat plus time to fill out her food journal before and after she eats.  But they only get 25 minutes for lunch.  After Lunch they have an advisory period for 18 minutes.  Which at this time we don't want our daughter to participate in because we don't know anything about the second step curriculum they are using.  We don't want it to interfere with her treatment.  This period would be perfect for the added time she needs for her lunch.  

She is currently doing the exchange food program.  Which we are having a hard time getting her to eat 100% which is the goal.  Any help would be great.  I think she needs residential treatment after we talked to her about not starting school right away.  She said if she didn't go to school she was going to have a mental breakdown.  I am truly at a loss as to what to do to help her.  I am so scared for her.  My husband and her mom (who I get a long with really well) gave in and said she could go to school.  So I feel her ED is winning because she won that fight and is putting her treatment 2nd.
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ValentinaGermania
I cannot help with 504 there but I can tell you what we needed to get from school in those days:
- supervision of morning snack (and a really good supervision I could really rely on)
- supervision of lunch was not possible here so I took her home for lunch
- no PE
- no health classes
- no school holiday trips
- she could come later if she did not finish breakfast in time or could stay at home if she refused breakfast (great incentive: when you have finished breakfast you can go to school)
- no tests in the first 2 months, other tests only when she was fit for it (parents decide)

I have a few questions about your therapy there:
Is that FBT?
Some things I do not understand:
"She should have 30 minutes to eat plus time to fill out her food journal before and after she eats."
What is that food journal? Is she asked to write down what she eats? I would not do that, that only feeds ED and makes her feel bad about eating that much.

Who supervised after the snack/lunch that she does not vomit in the bathroom? At least an hour after meals/snacks she should not be allowed to go to the bathroom. If school cannot guarantee that, she cannot go to school...

"She is currently doing the exchange food program."
What is that? Are you plating all meals and snacks? Does she have a meal plan with 3 meals and 3 snacks? Who decides what she eats?

"Which we are having a hard time getting her to eat 100% which is the goal."
If she is not eating all that is required at the moment and not gaining 0,5-1 kg each week already I would not allow her go back to school. Eating and heath comes first. When she eats all that is required and gains steadily she can go to school. If not, refeeding at home is first step.

Keep feeding. There is light at the end of the tunnel.
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Enn
Hi and welcome,
I am sorry for the circumstances that have led you here.We all do wish to help. 
I am in Canada and so cannot answer your question. I know that someone from the states will be along to help you soon. 
My d also said that if she could not go to school then she would rather die. We were able to use that as a motivator. My d was hospitalized for the first month after diagnosis. 
When she went back to school she was kept out of gym and recess, anything that would allow her to exercise. Health classes were not allowed, if the were talking about good or bad foods . D was aware that when she was struggling or not finishing her food at school o would stay home with her. It only happened once. 
Your ED specialist team may be able to help you to write out the accommodations required at school, I would think. 
With respect to her whole parental team, Do you all go to the therapist appointments together? That way everyone is on the same page, I also wonder if referring her mom to the forum may be helpful. She will likely need support too and that way you both could discuss/ search issues here? 
I will also find some 504 threads for you and post a bit later.
Please ask all the questions you have.
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Hendrixt
This might help from Eva Musby 

https://anorexiafamily.com/school-eating-disorder-anorexia/
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Enn

https://www.aroundthedinnertable.org/post/meals-during-school-504-plan-ada-laws-6647461?highlight=504&pid=1280568156
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Enn
https://www2.ed.gov/about/offices/list/ocr/docs/504-resource-guide-201612.pdf
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Foodsupport_AUS
Welcome to the forum. 
I also am not from the US so can't help with 504.

My daughter was not well enough to go to school, for around 18 months but when she did go back we had to arrange a lot of things.

We arranged accommodations for starting time/ finishing time for school
We limited which subjects she was able to do
No PE or sport
supervised meals and snack

Right now at this stage, the most important thing for her is that every meal goes in. There is no recovery without full nutrition. Many people on here have used FBT to help their child recover. I has the highest success rate for treatment and is very intense for families, however it does not work for everyone. 

It sounds like you may be doing a form of adolescent focused treatment since she is filling in food diaries.  Given the time that you are getting home from treatment, she will need some leeway for school the next day. 

Her keenness to start school may decrease once she realises that she will be supervised and not be able skip meals, but hopefully you can keep it up as an incentive. 
D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
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Kali

Dear Southernmom1582,

I had a couple of 504 plans set up for my son at different times when he injured himself.

I called the school and spoke with the vice principal and asked how to do it and he helped set it up

I needed to have a note from the doctor specifying what was wrong and submit that to the school nurse.

I needed to decide what to ask for; in one case it was busing home from school because he had a leg injury, as well as an elevator pass so he did not have to walk up stairs. The school also assigned someone to help carry his books while he was on crutches and moved his locker to a more central place which was situated nearer to his classes so he didn't have to walk that far to get his things. He was also excused in the event he was late to class because he was walking slowly with the crutches. (it was a large school) In the other case he broke his right hand the week before midterms senior year and I was able to ask for someone to sit with him while administering the midterms and writing down his answers. In both situations the 504 was set up in a day and the school was very helpful. It is a federal law and they are required to do this.


I don't know how it is in your state or whether this is a federal law also, but in ours if a child is seriously ill they are entitled, if they go to public school, to have home instruction provided by the district. So in the case that your daughter needs to be refed and cannot be in school, that might be an option to look into if she is well enough to participate in some tutoring either at home or through online classes.

 

Quote:

Home Instruction

Home instruction is the provision of one-to-one or small group instruction in the student’s place of residence or other appropriate setting due to a health condition, or need for treatment.

 

So depending on what you think your daughter could benefit from, 504 accommodations could range from:

Your daughter being excused from class and not penalized for any late homework or missed tests due to having doctor's appointments or coming late to school because she is not eating breakfast fast enough, and given the opportunity to make up any missed work.
Excusal from gym
Excusal from health class if they are doing any subject matter concerning "healthy" eating. 

Supervision during lunch, perhaps eating lunch with the nurse in her office. You would want to discuss with the nurse what the supervision includes.
Does it include someone getting her a lunch from the cafeteria so that she does not pick out the food herself? Or you dropping off her lunch with the nurse in the morning so she doesn't have any opportunity to throw part of her lunch away? Then sitting with her until it is finished. And you might want to ask that if she doesn't finish her lunch that she needs to sit until it is finished and not be penalized for any classroom time missed.

Hope this helps! And wow your school starts early! Ours doesn't usually start until after labor day.

Kali

 

 

 

Food=Love
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southernmom1582
tina72 wrote:


I have a few questions about your therapy there:
Is that FBT?  Yes we are doing Family based therapy also
Some things I do not understand:
"She should have 30 minutes to eat plus time to fill out her food journal before and after she eats."
What is that food journal? Is she asked to write down what she eats? I would not do that, that only feeds ED and makes her feel bad about eating that much.
The food journal is called Daily food-emotion journal.  She writes down her intentions (goals) for that meal and a number rating how she feels before she eats.  Then she should have 30 minutes to eat.  That is what they do at the treatment center when she eats there.Yes she is asked to write down what she is eating.

Who supervised after the snack/lunch that she does not vomit in the bathroom? At least an hour after meals/snacks she should not be allowed to go to the bathroom. If school cannot guarantee that, she cannot go to school...
Since school hasn't started and they are giving me a hard time we don't have anything set up yet.  Except for me to take her a lunch and watch her eat.  She hasn't done any purging that we know of.

"She is currently doing the exchange food program."
What is that? Are you plating all meals and snacks? Does she have a meal plan with 3 meals and 3 snacks? Who decides what she eats?
The exchange program is where each food group is assigned a number.  Then those are broken down into meals and snacks.  So she would need so many fats, starches, fruit, vegatables, dairy and proteins each meal.  Each one has a measurement.  Like proteins, 1 oz of meat equals 1 point in the food exchange.  So if she needs 3 at lunch she has to eat 3 oz of meat.  Her dad and I decide what she is eating because it is based off of what I am making for that meal.
 "Which we are having a hard time getting her to eat 100% which is the goal."
If she is not eating all that is required at the moment and not gaining 0,5-1 kg each week already I would not allow her go back to school. Eating and heath comes first. When she eats all that is required and gains steadily she can go to school. If not, refeeding at home is first step.
She will not eat everything she needs to all the time.  She will complain she stomach hurts or she has a headache.  

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southernmom1582
scaredmom wrote:
Hi and welcome,
I am sorry for the circumstances that have led you here.We all do wish to help. 
I am in Canada and so cannot answer your question. I know that someone from the states will be along to help you soon. 
My d also said that if she could not go to school then she would rather die. We were able to use that as a motivator. My d was hospitalized for the first month after diagnosis. 
When she went back to school she was kept out of gym and recess, anything that would allow her to exercise. Health classes were not allowed, if the were talking about good or bad foods . D was aware that when she was struggling or not finishing her food at school o would stay home with her. It only happened once. 
Your ED specialist team may be able to help you to write out the accommodations required at school, I would think. 
With respect to her whole parental team, Do you all go to the therapist appointments together? That way everyone is on the same page, I also wonder if referring her mom to the forum may be helpful. She will likely need support too and that way you both could discuss/ search issues here? 
I will also find some 504 threads for you and post a bit later.
Please ask all the questions you have.


Her mom most likely wouldn't join the forum.  I have been the one to do all the leg work in this battle.  Her mom only comes to the treatment center for the Family based therapy.  I take her to all her appointments, meeting, therapy and so on.  I have to drag my 22 month old along which is hard.  My husband can't take time off all the time because he is the only one who works (he is a driver for UPS).  
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Yogi13
southernmom

I am also pretty new to this but I am in the states as well (N.Y.).   I have attached the forms the guidance counselor gave us to use.  I am not sure if it varies from state to state, but at leas you have a guide.  My FBT psych filled them out for us, and we asked for supervised lunches and snacks.  I hope this helps.  

xx
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ValentinaGermania
The exchange program is something I knew is done for adult patients but I think it is not useful for kids.
It keeps them measuring and counting and that feeds AN. No normal kid eats that way. She should eat what you serve without questioning what is in there.

Also the journal. This is not FBT and I think this is counterproductive. It makes her concentrate on food in not a normal way and it makes her feel guilty for every bite she ate and she needs to document this guilt...
Keep feeding. There is light at the end of the tunnel.
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